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MICROSCOPIC COLITIS SUPPORT Forum Index MICROSCOPIC COLITIS SUPPORT
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues
 
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In Memory Of Sally Read
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tex
Site Admin
Site Admin


Zodiac: Gemini
Joined: 24 May 2005

Posts: 12168
User's local time:
2010 Sep 08 - 5:05 AM


Food Intolerances : Gluten and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat)
Location: Central Texas
PostPosted: Tue Dec 22, 2009 9:53 am    Post subject: Reply with quote
Polly,

Speaking of the Lotronex issue - I found an old post by Sally on another board, where she described her dilema, (I have no proof, of course, but I'm almost certain this was written by Sally):


Quote:
Irritable Bowel Syndrome - Lotronex and Collagenous Colitis
Expert: Verna Eileen Radcliffe - 7/30/2001

Question
I was diagnosed in December of 1999 with collagenous colitis. After my GI specialist prescribed numerous medications none of which worked, she finally prescribed Lotronex "off label." I had wonderful results with this medication and no bad side-effects other than slight constipation at the beginning which was easily controlled by lowering the dosage. The seven months that I was on Lotronex were the best I had in 9 years. Do you have any idea when or if Lotronex might be re-released? Without it, my symptoms have returned and I am forced to take large doses of prednisone to control frequent and painful diarrhea. Any encouragement would be appreciated.

Answer
Hello Sally,
Sorry to hear you're one of the hundreds of thousands who now suffer from the withdrawal of Lotronex from the market.

I personally believe that Lotronex will be re-released. This is based on my first hand knowledge of the efforts being made to see that this happens. If you would like to join in those efforts, i.e., email and snail mail letter writing and phone calls, visit The Lotronex Action Group website http://www.lotronexactiongroup.org Also visit the discussion forum about Lotronex at
http://www.ibsgroup.org/cgi-local/ubbcgi/Ultimate.cgi as well as Lotronex Central at www.geocities.com/lotronexcentral/ All of these sites can give you more support in coping with your condition and allowing you to feel there's someone who knows what you're talking about. There is also a petition online you can sign electronically (after reading it of course) and make comments if you wish. http://petitiononline.com/LOTRONEX/petition.html

Not everybody found relief with Lotronex but I'm glad you did. Hopefully when it's back on the market more Collagenous Colitis sufferers will be able to try it and more diarrhea predominant IBS sufferers will too.

Good luck,


From:

http://en.allexperts.com/q/Irritable-Bowel-Synd...enous-Colitis.htm
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cowboy

Remember: Status and honoraria go to those who support the current guidelines.
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MaggieRedwings
King Penguin
King Penguin


Zodiac: Gemini
Joined: 31 May 2005

Posts: 2546
User's local time:
2010 Sep 08 - 5:05 AM


Food Intolerances : Gluten, Soy, Eggs, Nightshades, Mushrooms, Bananas, Melons, Most Dairy, usually Citrus, Corn for the most part
Location: SE Pennsylvania
PostPosted: Tue Dec 22, 2009 1:25 pm    Post subject: Reply with quote
WELL HELLO CATHERINE!

I too so remember the board posts between you and Sally and really all of us. Those were the days but we have landed here on a great site and you are fondly remembered. I was sending Christmas cards when I got the email about Sally and having to not send one already written and addressed to her but so very difficult to do. So I didn't. I have it in my cards and will go into a memory box. What a lady she was. I also kept in touch with her and miss her so.

Hang around here, everyone will definitely enjoy your company.

Love, Maggie
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Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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catherineanathan

United States

Zodiac: Virgo
Joined: 21 Dec 2009
Posts: 4
User's local time:
2010 Sep 08 - 4:05 AM



Location: Hernando, MS
PostPosted: Tue Dec 22, 2009 4:25 pm    Post subject: Miss BN Reply with quote
barbaranoela
I remember you with great fondness! When you first started posting, the time you would take with your own special flourishes!!!

Do you know how old Sally was when she passed away??

And Miss BN, is your husband still living??

Much Love,
Catherine the Ripper
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catherineanathan

United States

Zodiac: Virgo
Joined: 21 Dec 2009
Posts: 4
User's local time:
2010 Sep 08 - 4:05 AM



Location: Hernando, MS
PostPosted: Tue Dec 22, 2009 4:27 pm    Post subject: Hello! Reply with quote
MaggieRedwings
I always liked your "handle." There are 5 gazillion redwing blackbirds in the Mississippi Delta - part of my service area.

xoxo,
Catherine
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catherineanathan

United States

Zodiac: Virgo
Joined: 21 Dec 2009
Posts: 4
User's local time:
2010 Sep 08 - 4:05 AM



Location: Hernando, MS
PostPosted: Tue Dec 22, 2009 4:30 pm    Post subject: Moderators Reply with quote
Polly
Glad to know you all are moderating "the board." It continues to be a VERY civil place!!! Keep up the good work! Sally set the tone - and y'all are following in her footsteps. Hard to comprehend her passing!!

Love,
Catherine the Ripper
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Polly
Moderator
Moderator



Joined: 25 May 2005

Posts: 3312
User's local time:
2010 Sep 08 - 5:05 AM


Food Intolerances : gluten, dairy, soy, corn(?), yeast, eggs, chocolate, carrageenan
Location: Maryland
PostPosted: Wed Dec 23, 2009 6:34 am    Post subject: Reply with quote
Catherine,

Sally was only 68. Much too young.

Love,

Polly
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Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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cludwig
Rockhopper Penguin
Rockhopper Penguin



Joined: 15 May 2006

Posts: 647
User's local time:
2010 Sep 08 - 2:05 AM


Food Intolerances : Gluten, casein, soy, egg, yeast, almond, lettuce, scallops
Location: Seattle
PostPosted: Mon Dec 28, 2009 4:33 pm    Post subject: Reply with quote
Hi Friends,

I did not know Sally, but I know what it feels like to have a stranger come into your life when you are feeling so sick and so weak and offer to be there for you during such an awful time. It is hard to find the type of kindness that I have found here from the potty people. So, for those who knew her, I am very sorry for your loss.

Love,
Cristi
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ant
Rockhopper Penguin
Rockhopper Penguin
Hong Kong

Zodiac: Pisces
Joined: 28 Jun 2009

Posts: 829
User's local time:
2010 Sep 08 - 6:05 PM


Food Intolerances : Gluten, Diary, Soy, Corn, and probably Eggs, Peanuts and other legumes, probably nightshades (tomatoes and potatoes?) raw fruit, sugar??) DX Osteoporosis. Suspect Celiac - Genes Type: DQ2/DQ8
PostPosted: Tue Dec 29, 2009 6:34 am    Post subject: Reply with quote
Dear Cristi

Quote:
I did not know Sally, but I know what it feels like to have a stranger come into your life when you are feeling so sick and so weak and offer to be there for you during such an awful time. It is hard to find the type of kindness that I have found here from the potty people.


iagree So well put! All best, Ant
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artteacher
Rockhopper Penguin
Rockhopper Penguin



Joined: 24 Aug 2005

Posts: 721
User's local time:
2010 Sep 08 - 6:05 AM
PostPosted: Sat Jan 02, 2010 1:33 pm    Post subject: . Reply with quote
Oh so sad.

But how wonderful to be remembered for the work you did, and the difference you made in people's lives. And to be remembered for your spunk and resourcefulness, and most of all, graciousness. Words can't express how much it meant to me to get support and validation (and jokes) in dealing with MC.

Sincerely, Marsha
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Joyce
Little Blue Penguin
Little Blue Penguin



Joined: 13 Jun 2005

Posts: 46
User's local time:
2010 Sep 08 - 4:05 AM



Location: Garden Grove, California
PostPosted: Sat Jan 16, 2010 11:06 am    Post subject: Sorry To Hear This News Reply with quote
Hi,

I'm sure not many will remember me (except for Polly & Sally) It's Joyce who walks.
I have not been on this site for at least a year. Every so often I come on and check things out. When I saw this thread I couldn't believe what I read.
I'm so very grateful to Sally for starting this site. She was so kind and such a caring woman. When I needed to know that I wasn't the only one with this terrible disease and needed support she was there.
Sally thank you for all you have done for everyone and you will be missed very much by all.
Love,
Joyce
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Polly
Moderator
Moderator



Joined: 25 May 2005

Posts: 3312
User's local time:
2010 Sep 08 - 5:05 AM


Food Intolerances : gluten, dairy, soy, corn(?), yeast, eggs, chocolate, carrageenan
Location: Maryland
PostPosted: Mon Jan 18, 2010 1:58 pm    Post subject: Reply with quote
Hey there Joyce who Walks!

Of COURSE I remember you!!! How are you doing after all these years? The big question is: Are you still walking?

Love,

Polly
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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MaggieRedwings
King Penguin
King Penguin


Zodiac: Gemini
Joined: 31 May 2005

Posts: 2546
User's local time:
2010 Sep 08 - 5:05 AM


Food Intolerances : Gluten, Soy, Eggs, Nightshades, Mushrooms, Bananas, Melons, Most Dairy, usually Citrus, Corn for the most part
Location: SE Pennsylvania
PostPosted: Wed Jan 20, 2010 10:19 am    Post subject: Reply with quote
Hi Joyce,

So nice to see a post from you - it has been way too long. I well remember you too and along with Polly, hope you are well and still walking. Sally was definitely a rock for us for many years.

Love, Maggie
_________________
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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